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100 days to spread hope.
Fight rare neuro-immune disorders. Together.
Elba, my wife, is an inspiration. She has Neuromyelitis Optica Spectrum Disorder (NMOSD). The first outbreak was in 2003, and there was no test at that time. Elba is Venezuelan, we had been travelling in the U.S., but she returned to Venezuela for treatment. They suspected West Nile Virus, which has some similar initial symptoms. She spent three months in the hospital, three weeks of that in ICU, and three days of that in a coma. The doctors told her family to call for a priest.
But she slowly regained strength and got back on her feet. One of her vocal cords had atrophied, and she was unable to swallow, so she had a PEG feeding tube implanted in her stomach for 1½ years. Speech therapy and TENS were able to get that vocal cord working again, and the PEG tube was removed. She did pretty well then, teaching Spanish at the University of North Texas. We travelled and had our home in Roanoke, TX.
Then, in 2010, Elba collapsed while giving a final exam just before Christmas. She was taken to the ER and admitted to the hospital. A very wise Neurologist (Dr. David Cook) took some spinal fluid and sent it to the Mayo Clinic. He felt it was transverse myelitis. He had her transferred to UTSW in Dallas.
Dr. Ardith Courtney (of Dr. Greenberg’s team) began treatment at UTSW. The test came back positive for NMO IgG. Plasmapheresis began (cleaning out the blood, removing the plasma)—five courses of this over ten days. Then, the first Rituxan chemotherapy.
We spent Christmas and New Years at the hospital. Six weeks later she came home. She did a lot of physical therapy, and eventually returned to teaching. The spinal lesion is long, T1-T7, and the pain from this is horrendous. The pain would be debilitating if not for a complex course of medicine. Even so, some days the pain is intolerable.
So, why is Elba inspirational?
Despite a grave neurological disease, she is always optimistic, with a bright outlook on life. Elba volunteers at our church, and everyone there says how much they like working with her. She is the glue holding her family in Venezuela together. Venezuela is going through a very difficult time, and her two sons, five sisters, other family need our support.
We go to church, and both pray daily, less to ask why she got the disease, but to ask what we should do next? Our church has been very supportive with the priest visiting the hospital multiple times.
And she has made me a better person: being a caregiver is hard work! Luckily, she is my hero. The patience she has shown has allowed me to learn more patience myself. The strength she has shown has made me stronger. When I pray at night, I cry, so I can show her that strength tomorrow; all the tomorrows. I don’t think either of us could have gotten through this without the other.
Together, we are a single entity that can do almost anything—our hope and adventure will continue!
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